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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Pregnant clusterhead

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Pregnant clusterhead (Read 2342 times)

Jua82

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Pregnant clusterhead
Jun 28^th, 2015 at 11:05am

I've been a cluster head for about five years. I am one of the "lucky" ones because I received a correct diagnosis within a week of my first attack and the first treatment I was prescribed (Verapamil) worked wonders. However, I felt like my luck finally ran out two weeks ago when I started a new cycle while 28 weeks pregnant. No drugs for me, especially when my midwife looked at me blankly and said take Tylenol and lay down. Cry

. However, after spending some time on ch.com Grin

I ran to the nearest urgent care armed with my research and begged for oxygen.

After the initial "you can't have CH, you're not a man" runaround I finally persuaded the Dr. to prescribe the oxygen. It was delivered two days ago and let's just say the oxygen delivery man has replaced the epidural delivery man as my new best friend. Cheesy

The first night I had two attacks that oxygen aborted within two minutes. Last night I had three. Two were gone in two minutes but the last was stronger and took ten minutes, although the pain never got above a 4-5 on the Kip scale. Compared to my usual hour at a 9, I'll take it!!

I know many people have praised the powers of oxygen, but I just wanted to add my testimonial, especially for pregnant cluster headache sufferers with no other choice. And be prepared to push for a prescription. I'm not a very aggressive person, but the beast brought it out in me and I wasn't leaving that office without my prescription.

By way of practical information, I live in Kansas City, MO and Apria Health is charging me $168 a month for oxygen. It is covered 100% by insurance after meeting my deductible. I haven't yet, but if we have to restructure our entire budget to make it work, that's what we will do. My husband is behind me completely. He has held me while I cried for too many nights to not be first in line to pay the bill.

« Last Edit: Jun 28^th, 2015 at 11:06am by Jua82 »

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Potter

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Re: Pregnant clusterhead
Reply #1 - Jun 28^th, 2015 at 11:45am

Jua82 wrote on Jun 28^th, 2015 at 11:05am:

. However, after spending some time on ch.com Grin

Great post.

Potter

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Batch

CH.com Alumnus

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Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Pregnant clusterhead
Reply #2 - Jun 28^th, 2015 at 2:20pm

Hey Jua82,

It's time for your husband to take up a new hobby... Oxyacetylene welding... He can pickup an M-size welder's oxygen cylinder for ~ $180 (the deposit) then refills are roughly $35... (Drop off the empty and pick up a fully charged cylinder for $35). Just don't tell the people at the welding supply outlet how you're using the oxygen. BTW, welder's oxygen is just as pure as medical oxygen...

You'll need a CGA-540 0-15 liter/minute or better yet 0-25 liter/minute regulator and a ClusterO2 kit from here at the CH.com store at the left. You can find the regulators on the Internet. The following link is a good example for $50...

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Oxygen therapy is very safe during pregnancy for you and the baby... Far safer than the pharmaceutical alternatives like sumatriptan succinate (imitrex).

You also need to talk with your OB/midwife about the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors...

The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need. I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the Internet:

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If you can’t get to a Costco outlet, a CH’er in the UK has found a source for all the needed supplements at iherb.com. See his post at the following link for details on how to order them over the Internet:

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The vitamin B 50 is not shown. You’ll need a 3-month course of vitamin B 50 to handle any deficiencies among the seven B vitamins. Although the Super K with vitamin K2 complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take.

This is a very healthy and very safe way to prevent your CH. It's also a great way to build your immune system and that of the wonderful baby growing inside you...

I have my entire family taking the anti-inflammatory regimen. That includes my brother, wife, three kids, their spouses and seven grand kids.

The kids get vitamin D3 at 50 IU per pound of body weight and the rest of the supplements at RDA for their age group....

You can find the RDAs for each supplement by age group at the Linus Pauling Institute Micronutrient Information Center at OSU at the following web site.

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My daughter has been taking the anti-inflammatory regimen for the last four years. She announce she was pregnant in December 2013, and said she had spoken with her OB and planned to stay on this regimen throughout her pregnancy and after as she was planning to breast feed.

And that brings me to Fred...

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Fred, a.k.a., Winefred, is nearly a year old wunderkind and our 7th grandchild. (photo taken at 6 months) Born on July 7, 2014, she was rolling over and starting to crawl at 5 months and I'm positive she started to speak words in English and German about that same time... but then I'm a doting old grandfather. Fred is now walking an talking a blue streak...

Fred's at the 99th percentile in size, weight and development both physical and mental according to her pediatrician... She has never had a cold, a rash, rosacea, eczma, jaundice or any of the medical problems typically experienced by many newborns.

We attribute Fred's exceptional good health and development to the fact that her mother has been taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and all the cofactors for the last four years and continues to do so while breast feeding Fred... She's also started solid food... albeit run through an immersion blender first.

My daughter's pregnancy and Fred's delivery were flawless and trouble free. In short this child has been on a therapeutic dose of vitamin D3 since conception and is still taking vitamin D3 today through breast feeding...

Both my daughter's OB and Fred's pediatrician are totally on board with this regimen. They were a little concerned at first, but after a couple rounds of labs came back in the green, the trouble free pregnancy and delivery coupled with Fred's exceptional good health... all that changed. My daughter's OB now suggests this regimen to all his expectant and breast feeding mothers.

A recent study of breastfeeding neonates found maternal serum vitamin D3 was passed through breast milk to the suckling neonate but not maternal 25(OH)D, the first metabolite of vitamin D3. Moreover, several studies indicate the rate of vitamin D3 transfer through breast milk is roughly one third the maternal serum concentration.

That means Fred was getting the equivalent of 3000 IU/day vitamin D3 while hooked up to cable prior to birth and she's getting the same amount now from her mother's milk.

As usual, discuss this regimen with the family PCP or pediatrician and schedule a lab for your 25(OH)D you are very likely vitamin D3 deficient and that deficiency is contributing to your cluster headache...

The normal reference range of 25(OH)D is 30 to 100 ng/mL. However, most physicians will interpret 31 ng/mL as normal. While that may be true and a high enough concentration to prevent rickets... it's far too low to prevent CH. CH'ers need to have their 25(OH)D up in a range between 60 to 110 ng/mL (The target 25(OH)D serum concentration is 80 ng/mL). Taking 10,000 IU/day vitamin D3 with result in a 25(OH)D response of 80 ng/mL.

Over the last four years at least 600 cluster headache sufferers (CH'ers) have started the anti-inflammatory regimen of vitamins and minerals with at least 10,000 IU/day vitamin D3. 83% of them have experienced a significant reduction in the frequency, severity and duration of their CH.

75% experienced multiple 24-hour pain free periods and 60% remain essentially pain free. This regimen is equally effective for episodic and chronic CH'ers. This regimen is also effective for Migraineurs in preventing their headaches.

If you’re in doubt about starting this regimen read Zd10’s post in the following link:

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VitaminDWiki has an excellent coverage of vitamin D3 requirements during pregnancy at the following link:

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Lots of sound medical evidence supporting the use of vitamin D3 supplements during pregnancy.

Take care and please keep us posted.

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Robincw66 CH.com Newbie Offline I Love CH.com! Posts: 1	Re: Pregnant clusterhead Reply #3 - Aug 5^th, 2015 at 12:53pm I was in cycle while pregnant, and eventually my Doctors put me on Namenda as its a class B drug and they felt better for the baby than the stress of the clusters. I was Headache free until about 10 weeks after delivery
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Pregnant clusterhead Reply #4 - Aug 7^th, 2015 at 7:18pm Hi Robin and welcome What are you using now as a preventive and do you have CH abortives available?
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Bob Johnson

CH.com Alumnus

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Pregnant clusterhead
Reply #5 - Aug 11^th, 2015 at 1:49pm

Medical literature is very careful and cautious about treatment of Cluster while pregnant. I would not accept any advice which you read here because it's not based on these special concerns.

Discuss with your doc the wisdome of seeing a headache specialist in addition to your OB.
====
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=========
Se the articles below. You may wish to get your local library to obtain a full length reprint.
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Title: Treatment of cluster headache in pregnancy and lactation.
Source: Calhoun, A H. Current Pain And Headache Reports Volume: 14 Issue: 2 (2010-04-01) p. 164-173. ISSN: 1531-3433

(Local library can obtain a full copy. Provide full citation.)
========
Curr Pain Headache Rep. 2010 Apr;14(2):164-73.
Treatment of cluster headache in pregnancy and lactation.
Calhoun AH, Peterlin BL.
Source: Department of Psychiatry, University of North Carolina, Carolina Headache Institute, Chapel Hill, 27516, USA. calhouna@carolinaheadacheinstitute.com

Abstract
Cluster headache (CH) is a neurovascular headache syndrome characterized by headache attacks that occur with a circadian and circannual periodicity. The calculated prevalence of CH in reproductive-aged women is 7.5 of 100,000 women. Although data suggest that CH during pregnancy is a relatively rare condition, when it does occur, attacks remain unchanged in character and severity in the majority of patients. Thus, treatment of CH in pregnant and lactating women may remain a significant therapeutic challenge. This manuscript briefly reviews the epidemiology of CH in women, and then focuses on treatment options for both acute and preventative management of CH in pregnant and lactating women.

PMID:20425207[PubMed] [Take this citation to your local library; they can obtain a full copy of the article for little cost.]
======

« Last Edit: Aug 11^th, 2015 at 1:51pm by Bob Johnson »

Bob Johnson

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